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Totally understandable!!! I had to quit college quite a few times because of IBD and even having it in high school was brutal. I wish teachers and everyone in general can understand and be more empathetic towards people. A lot of people do not even try to understand things until they are going through it themselves; that needs to change!

So happy you got through everything! I love hearing how people do not let IBD or other situations beat them!

definitely! I'm happy to hear you are well now. its honestly such a mental strain too. cant focus on anything because its constant pain. did you also get a j pouch around the same age?

OMG! Same here!!! I was diagnosed at 17 too!!!! Did they give you Biologics like Remicade? I never did biologics. I tried Azathioprine, Mesalamine, Apriso, Prednisone, Lialda, and Uceris.

What have you tried???

omg haha. yea, i tried lialda and mesalamine first, then humira, and then remicade and prednisone while i was hospitalized. now i literally only have to take one pill of immodium a day and i'm all good!

@edp posted:

omg haha. yea, i tried lialda and mesalamine first, then humira, and then remicade and prednisone while i was hospitalized. now i literally only have to take one pill of immodium a day and i'm all good!

Oh you tried a lot of stuff I see! Happy to hear that you are better

It must have been hard for you to make it to the remicade infusion centers during high school! That must have been a nightmare back then lol, epsecially 4 hour treatments!

You graduated high school still too!, You are a very determined person! I am soo proud of you

Last edited by Lauren Of Emerald City

Oh you tried a lot of stuff I see! Happy to hear that you are better

It must have been hard for you to make it to the remicade infusion centers during high school! That must have been a nightmare back then lol, epsecially 4 hour treatments!

You graduated high school still too!, You are a very determined person! I am soo proud of you

aww thank you!! definitely not easy for any of us. proud of everyone who makes it through and those still fighting. have you had any issues since the takedown?

@edp posted:

aww thank you!! definitely not easy for any of us. proud of everyone who makes it through and those still fighting. have you had any issues since the takedown?

The first week of Takedown, I was not taking it easy like I should have. I did leg lifts and my stoma wound opened up resulting in wound separation. Water/soap got in there from the shower too and it infected the area. The infection spread to the whole small intestine including the pouch. I had to go back to the hospital for bowel rest and antibiotics for a couple of days. It was my fault though lol. Ever since then I have not gone back to the hospital for my pouchy.

I only had minor issues since then like if I eat the wrong thing or do not drink enough water I get constipated, but that is only a couple of times a year thank goodness. Nothing major.

How about you???

The first week of Takedown, I was not taking it easy like I should have. I did leg lifts and my stoma wound opened up resulting in wound separation. Water/soap got in there from the shower too and it infected the area. The infection spread to the whole small intestine including the pouch. I had to go back to the hospital for bowel rest and antibiotics for a couple of days. It was my fault though lol. Ever since then I have not gone back to the hospital for my pouchy.

I only had minor issues since then like if I eat the wrong thing or do not drink enough water I get constipated, but that is only a couple of times a year thank goodness. Nothing major.

How about you???

oh man that sucks. i never had any complications like that but i just found out i have pouchitis and cuffitis. its pretty common though and not as painful as UC.

I was 17...  Senior in high school. 1990.  Even with the issues many of us have had since the surgery, I feel so very lucky.  Abscessed fistulas and two more  runs with  temp ilieostomies after the fistula repairs.   Blockage surgery, strictures, dilatations...  These complications were nothing compared to what life was like prior to getting my J-Pouch.  I was 5' 9" and weighed 88 pounds,   blood transfusions and spent a month at the hospital before I was healthy enough to have the surgery. I am hoping and praying my J-Pouch holds out many more years.   I gained my weight back quickly (lol) and can eat most foods.  I do have "accidents" and wear pads all day/every day.  But, life is good.  So many have gone through much, much more.  

@3Cutedogs posted:

I was 17...  Senior in high school. 1990.  Even with the issues many of us have had since the surgery, I feel so very lucky.  Abscessed fistulas and two more  runs with  temp ilieostomies after the fistula repairs.   Blockage surgery, strictures, dilatations...  These complications were nothing compared to what life was like prior to getting my J-Pouch.  I was 5' 9" and weighed 88 pounds,   blood transfusions and spent a month at the hospital before I was healthy enough to have the surgery. I am hoping and praying my J-Pouch holds out many more years.   I gained my weight back quickly (lol) and can eat most foods.  I do have "accidents" and wear pads all day/every day.  But, life is good.  So many have gone through much, much more.  

I am sorry to hear hon!!! I hope things get better!! Have you tried loperamide to help with the accidents???

@Lu31 posted:

Thank you.  Yes wasn't easy as we all know.  I had the 2nd and 3rd surgeries in the summer but last one done right before returning to school. Ended up missing a bit anyways as my system took time to get used to it. Still, happy to get rid of the bag.

You are welcome! And wow that is amazing!! Soo cool how you overcame that and still graduated Graduated not letting stuff defeat you

I had anal atresia at birth, part of a group of birth defects that appear together called VATERS syndrome. I also have Ehlers Danlos syndrome which is a connective tissue disease that impacts the creation of collagen (the glue that holds things together in your body). The result was that every time that they tried to surgically fix the anal atresia they made it worse until I no longer had a functioning sphincter. I also had IBD (or IBS, I can never remember) but I had bloody stools and horrific cramping for years.

Add that to no sphincter and you have the picture. Life was hell. 2 failed Gracillis muscle transplant surgeries to try to create a functional sphincter and I was done. I had already had a colostomy that wrought havoc on my skin (collagen again) and I had to find an alternate solution.

The Kpouch was the miracle that saved my life and gave me a life.

It has been 41 yrs and I am still thrilled.

Sharon

@skn69 posted:

I had anal atresia at birth, part of a group of birth defects that appear together called VATERS syndrome. I also have Ehlers Danlos syndrome which is a connective tissue disease that impacts the creation of collagen (the glue that holds things together in your body). The result was that every time that they tried to surgically fix the anal atresia they made it worse until I no longer had a functioning sphincter. I also had IBD (or IBS, I can never remember) but I had bloody stools and horrific cramping for years.

Add that to no sphincter and you have the picture. Life was hell. 2 failed Gracillis muscle transplant surgeries to try to create a functional sphincter and I was done. I had already had a colostomy that wrought havoc on my skin (collagen again) and I had to find an alternate solution.

The Kpouch was the miracle that saved my life and gave me a life.

It has been 41 yrs and I am still thrilled.

Sharon

AMAZING!!!! Glad your better

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